Emma's Story

Aged 15 months, Emma was diagnosed with a pilocytic astrocytoma (brain tumour) on her hypothalamus. Although previously she had appeared healthy, after 10 months she failed to gain weight and developed a twitch on her right eye. A visit to the doctors sent her to hospital for eye tests, followed by a CAT scan, before MRI scans revealed Emma had a tumour about the size of an apple, which was beginning to cause increased pressure and headaches. Emma had a VP shunt fitted to relieve the pressure in her brain, a feeding tube to help her gain weight and a biopsy to help diagnose the type of tumour. Unfortunately, the build-up of pressure from the tumour had damaged Emma’s optic nerves and as a result she is effectively blind in one eye.

Emma then began twenty months of chemotherapy at the age of only 16 months. This initial chemotherapy was effective at reducing the size of the tumour. However, Emma became increasingly less tolerant of one of the drugs before showing an allergic reaction which meant a change of the regime for the final cycles of chemotherapy. Unfortunately when Emma finished chemotherapy the tumour started to grow and after just a 6 month gap Emma had to restart chemotherapy. This is a pattern which has persisted since with chemotherapy halting the growth of the tumour with some reduction in size followed by the tumour growing again once Emma has come off treatment.

Now aged nine Emma has been on and off treatment for the past 8 years and is onto her fifth chemotherapy regime. She has had to have repeated hospital visits, with numerous tests to ensure that she continues to develop and to monitor for potential damage, and a further biopsy due to new lesions. Whilst the chemotherapy has at times hit Emma hard, with the typical tiredness, nausea, hair loss, reduced reflexes and some discomfort in her lower joints, she manages to enjoy a range of activities including dancing. Since Emma’s original diagnosis the tumour sample from the biopsy has been retested as new research in the last 8 years means doctors now know more about the type of tumour Emma has.